School of Sociology & Social Policy, University of Leeds, Leeds, LS2 9JT, United Kingdom.
Centre for Disability Studies, University of Leeds, Leeds, United Kingdom.
Mult Scler Relat Disord. 2020 Nov;46:102507. doi: 10.1016/j.msard.2020.102507. Epub 2020 Sep 19.
There are now large cohorts of people with relapsing-remitting multiple sclerosis (pwRRMS) who have taken several Disease-Modifying Treatments (DMTs). Studies about switching DMTs mostly focus on clinical outcomes rather than patients' decision-making. Neurologists are now required to support decisions at various times during the relapsing disease course and they do so with concerns about DMTs risks. This qualitative study investigates how pwRRMS weigh up the pros and cons of DMTs, focusing on perceptions of effectiveness and risks when new treatments are considered.
To increase understanding of people's experiences of decision-making when switching DMTs.
30 semi-structured interviews were conducted with pwRRMS in England. 16 participants had switched DMT and their experiences were compared with those who had only taken one DMT. Interviews were analysed thematically to answer: what main factors influence people's decision-making to switch DMTs and why?
Of the 16 participants with experience of switching DMT, eight had taken two or more DMTs; eight had taken three or more. Two was the DMT median. This study demonstrated that despite the term "switching" implying that similar treatments are inter-changeable, for pwRRMS taking new treatments involves different emotions, routines, risks, prognosis and communication experiences. Two meta themes identified were: 1) A distinctive, rapid and emotional decision-making process where old emotions related to MS prognosis are revisited. 2) Switching has a different impact on communication for escalation or de-escalation processes.
Switching DMT involves different routines, risks, prognosis and communication experiences. These decisions are emotionally difficult because of the fear about transitioning to secondary progressive MS, and DMT effectiveness uncertainty. Patient centred decision aids should include information about first and consecutive treatment decisions.
目前有大量的复发性缓解型多发性硬化症（pwRRMS）患者接受了多种疾病修正治疗（DMT）。关于切换 DMT 的研究主要关注临床结果，而不是患者的决策。现在要求神经科医生在复发疾病过程的不同时间支持决策，他们这样做是出于对 DMT 风险的担忧。这项定性研究调查了 pwRRMS 如何权衡 DMT 的利弊，重点关注在考虑新治疗时对有效性和风险的看法。
增加对人们在切换 DMT 时决策的理解。
在英格兰对 30 名 pwRRMS 进行了半结构化访谈。16 名参与者已经切换了 DMT，他们的经验与仅接受一种 DMT 的参与者进行了比较。对访谈进行了主题分析，以回答：影响人们切换 DMT 的决策的主要因素是什么，以及为什么？
在有切换 DMT 经验的 16 名参与者中，有 8 人服用了两种或两种以上的 DMT，有 8 人服用了三种或三种以上的 DMT。中位数为两种 DMT。这项研究表明，尽管“切换”一词暗示类似的治疗可以相互替代，但对于 pwRRMS 来说，服用新的治疗药物涉及不同的情绪、常规、风险、预后和沟通体验。确定了两个元主题：1）一个独特、快速和情绪化的决策过程，其中与 MS 预后相关的旧情绪会重新出现。2）切换对升级或降级过程的沟通有不同的影响。
切换 DMT 涉及不同的常规、风险、预后和沟通体验。这些决策在情感上很困难，因为担心过渡到继发性进展性多发性硬化症，以及 DMT 有效性的不确定性。以患者为中心的决策辅助工具应包括关于首次和连续治疗决策的信息。
